Saturday, October 18, 2014

Flashback- Summertime fun

I'm embarrassed that it is the middle of October and I'm just now posting about our busy and fun summer. I have worked on this post many different times over the last 2 months, but with what seems like a million pictures to go through and very little free time I'm just glad I'm finally posting it! I thought I'd have all this free time with Mason in Kindergarten, but that really isn't the case. I do help at least two days a week in his class (which I love by the way), but also with kindergarten being less than 3 hours long it seems like by the time I get the morning mess cleaned up, showered, and a load or 2 of laundry started... kindergarten is over! The good news about kindergarten so far is that Mason has not missed a day of school for being sick! Hooray!

Mason continues to get an IVIg infusion every month. (That's actually where we are right now. It's Wednesday night October 15 and we are spending the night for his infusion). Tomorrow morning we will go to transplant clinic. It's been two months since Mason's last clinic visit and echo. That is a long time for us! We have gone two months a couple times in the past, but his rejection would always start to creep back up and we'd be back to more frequent visits. Hopefully that's not the case this time! He seems to be doing GREAT so I'm praying that means a great clinic visit too! His next heart cath/biopsy is scheduled for November 13 to follow up on his rejection.

So here it is... a picture summary of our summertime fun. Cousin's camp, a wedding, California, baseball, and a 2nd trip to Lake Powell kept us quite busy from the middle of June until school started the third week in August! Lots of fun memories...

We celebrated the Fourth of July at Riviera Beach in San Clemente with some patriotic face painting(colored zinc sunscreen), body surfing, boogie boarding,relaxing in the sun, playing beach baseball, and visiting with some good friends. It was an great day!!!

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That night we watched an amazing firework

show from above the Dana Point Harbor.

Preston got some cool photos of the fireworks as well!

Early morning surfing.....

We were even lucky enough to have cousins at the

beach with us for a couple of days this year!

We had fun hanging out with cousins at Salt Creek!

Although, Mason was not feeling so great this day :(

Saturday morning we picked the girls up at the train station after their fun week in Santa Barbara.

(This is the medicine prep for a week away with Mason)Crazy huh?! But, well worth it!

The week was filled with...

wake surfing, wake boarding, paddle boarding,

cliff jumping, sea-dooing, picture taking,

(You can sure tell that all these beautiful cousins are related!)

The nights were just as beautiful as the days!!!

I will say... I'm so grateful that Mason has been

doing so well! Healthy enough for Mason and I

to enjoy all these fun family memories this year!

Just to wrap things up, It's now Saturday October 18 and I'm finally finishing this!! The IVig all-nighter went well. Mason is such a good sport about it! Then clinic the next morning was fantastic! His echo looked great, his blood work was good, he has but on almost 4 pounds (putting him up to 35 lb's), and the transplant team was pleased with how well he has been doing. So hopefully he won't need to be seen until his biopsy next month. An exciting parts of clinic was meeting the transplant team's newest doctor to join them. We actually knew him at Stanford! He had been doing his pediatric cardiology fellowship while we were there waiting for Mason's heart. It was just so great to reconnect with someone from Stanford. Mason and I had such a great experience at Stanford that I've missed being able to go back! And, I also know he will bring some great knowledge and experience to Primary's Transplant team.

1 comment:

There has been a trust fund set up on behalf of Mason Andrew Strickland. You can donate by calling or visiting any Wellsfargo branch.https://www.wellsfargo.com/locator/OR by clicking on the "Donate" button below.

Mason Andrew Strickland was born on November 30, 2007! He came 3 weeks early at the American Fork Hospital, weighing in at 5 lbs 8 oz . He is the baby brother to 3 brothers and 1 sister. At 3 days old he became very sick at home. After a trip by LifeFlight to Primary Children's Hospital that afternoon he was diagnosed with a variation of Hypoplastic Left Heart Syndrome. Mason will need at least 3 open heart surgeries before he is 3 years old. He had his first surgery when he was 10 days old and spent 7 weeks in the hospital. He had his 2nd surgery at 6 months old and only spent 1 1/2 weeks in the hospital. Mason also has issues with arythmias which has caused him some scary moments, a 2nd trip by Life Flight, and more time back at Primary's PICU. We feel blessed for everyday we have him here with us. We have created this blog to follow our journey through life with our little broken hearted baby, Miracle Mason (with a few tid bits about the rest of the family too).

It's now October 3, 2009 and Mason's story needs be updated. In April 2009 Mason was diagnosed with lowered heart function (or heart failure). From April through now he has been on medications and oxygen to help improve his heart function. In August, with no improvement seen in his echos we began the process to list him for a heart transplant. He is unable to get the 3rd surgery (or Fontan) as planned because of his heart failure. On Sept, 3, 2009 he had his pre-transplant Heart Cath (the last thing needed to list him for a new heart). The results that day have left us heart broken. He was diagnosed with severe pulmonary vein stenosis and is unable to receive a heart transplant. He will now need a heart-lung transplant, if he is a viable candidate. Since Primary's does not have a heart-lung program we are seeking opinions from other hospitals (outside of Utah) at this time. Even though we are extremely saddened with his most recent diagnosis, we continue to find joy in our journey with our special child of God, our sweet Mason.

(In November 2009 we learned of another possible option for Mason. CHOP and Stanford have both talked to us about doing just a heart transplant to his own one healthy lung. At this time we are exploring that option and the possibility of it being another true miracle for "Miracle Mason".)

February 16, 2010 Mason and I (Mom) flew to Palo Alto, California to do a few last tests and get Mason listed for a new heart(heart only!! not heart-lung!!) at Lucille Packard Children's Hospital at Stanford. We are excited and nervous to start this new chapter of our journey.

March 3, 2010 Mason was officially listed on the Heart Transplant waiting list as a 1B status. Mason and I will wait here in Palo Alto until he receives the miraculous gift of a new heart. We miss our family at home very much!

April 4, 2010 (Easter morning) Mason received his new heart. It was the best Easter gift our family could ever be given. We are eternally grateful to his donor family who during their time of loss selflessly gave our Mason a second chance at life.

July 16, 2010 Mason and Mom flew home to Utah to reunite with their family. Mason is still very immunosuppressed in order to avoid rejection of his new heart, but definitely happy to be home playing w/ his brothers and sister!!

January 30, 2012 Mason continues to do well with his new heart. He finally came off of steroids after 18 months in October 2011! Mason is walking with the help of a walker in hopes to walk alone soon. He conitues to have a few episodes of a pneumonia each year, probably due to only having one working lung. He also has a few new issues we are facing .....sleep apnea and severe scoliosis. But, over all he continues to face life with a fight and a big smile!

April 11, 2012 Mason had back surgery because his scoliosis had worsened to a curve of 75% (normal is 0-15%). He had two rods placed in his back, better known as the VEPTR (Vertical Expandable Prosthetic Titanium Rib). It was a rough recovery, but after about 8 weeks he was feeling much better. Every 6 months he will go in for a minor surgery to extend the rods to keep up with his growth.

May 25, 2012 We finally got into a sleep doctor and she diagnosed Mason with sleep hypoxia, rather than actual apnea. Because of narrow airways his sats dip frequently through out the night, but he doesn't completely stop breathing (good news!). So he was perscribed to be on one liter of oxygen at night while asleep.

July 20, 2012 Mason finally walks all on his own!!

Not a day goes by that we don't think about Mason's donor family who has given our little miracle boy the gift of LIFE! Thank you where ever you are!